Are You or Someone You Know Living with Metastatic Breast Cancer? We Need Your Input!

Voice-MegaphoneHave you ever been told by a fellow breast cancer survivor: “You went from stage I to stage IV? I don’t want to hear that!” Are you tired of the question: “How long will you be in treatment?” Do you feel isolated or ignored by researchers? Are your family and friends desperate for guidance on how to help you?

All the feelings and problems above were expressed to me by just ONE of the young women with metastatic breast cancer (MBC) that YSC serves. Feedback like this (read more below) and from the first YSC Research Think Tank meeting earlier this year is the driving force behind YSC’s new survey, It’s About You: Getting Insights From Young Women with Metastatic Breast Cancer.

YSC wants to know what YOU think you need, so we are asking detailed questions about your current situation and what has and has not worked for you. We want to get at the roots of the problems young women with MBC face and provide the breast cancer medical, research and support communities with in-depth information to help them identify and create impactful interventions to significantly improve your quality of life and fulfill your emotional needs.

 

If you are a young women living with metastatic breast cancer, please take our survey here.

http://www.surveymonkey.com/s/MyMBCYSC

If you know a young woman with metastatic breast cancer, please share this survey with her. Use the Facebook or Twitter buttons above or email her the URL.

 

We will be sharing the results from this survey in public forums and scientific meetings, including ABC2 – Advanced Breast Cancer Second International Consensus Conference being held this November in Lisbon, Portugal. Make sure your voice and needs are heard at this conference by responding soon.

If you have any problems with or accessing this survey, please contact Jean Rowe by email or phone at 317.417.9188.

Thank you!

P.S. YSC appreciates your input and will provide a thank-you gift to all young women with MBC who complete this survey.

 

Why is this important?

The following is from Kim, a young woman with MBC who is a YSC constituent and volunteer.

I am one of many young women living with metastatic disease. It’s an uncomfortable place to be. Sadly, we all know that very little research dollars go towards metastatic research, so that leaves a lot of us wondering if they (big researchers) even care about us. I try to navigate day-to-day life with this disease. As a single woman with no kids, I try to find my place in this world despite a big dark cloud over my head.

I realize that other than my fellow metastatic friends, no one can fully understand what it feels like. I sought out a support group only to be told by a woman with early stage breast cancer “you went from stage I to IV? I don’t want to hear that?” Neither did I, and I don’t want to live it. When I meet people and they learn of my disease they respond “but you look great” or “but you have hair.” Then there is “how long will you be in treatment?” Or my favorite “at least it’s just breast cancer, that’s curable, right?” No, sadly, it is not. No one understands.

I hope that by giving young women living with mets a voice, a place to fully express their experiences with honest and sincerity, YSC can shed light on what it is like for us every day. I also hope that the results can provide guidance to our friends, family, doctors and researches on how to help us find our way through this disease and a level of understanding for the burden that we bear.

 

 

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Fall Is Almost Here and YSC Tour de Pink Is Right Around the Corner! (Oh yeah!!!)

 

With my first year behind me, I am more confident in my ability to train this year on my awesome 2012 Liv/giant YSC Avail Inspire bike, designed by Emily Gresh, a fellow young breast cancer survivor and TdP rider.

This year’s YSC Tour de Pink® (TdP) is extra special for me since my survivor sister and dear friend, Kate McGough, has decided to ride her first TdP with me. I can’t wait to share this journey with Kate and introduce her to the Tour de Pink family!

Me, kneeling at center, with my 2012 Team Airavata

Me, kneeling at center, with my 2012 Team Airavata

TdP is a big commitment — I get it! “I’ll be back,” I promised my new TdP friends last year, and here I am preparing to tackle both the East and West Coasts yet again. My Airavata teams, symbolically named after the warrior elephant, are ready to roll!
2013 YSC Tour de Pink
Join Me @ TdP – Register Online Today!
— Or —
Support Jennifer’s Ride
 

 

Rachel Keenan and me with our new Liv/giant Avail Inspire bicycles

Rachel Keenan and me with our new Liv/giant Avail Inspire bicycles

Training is hard — trust me I know! Finding time to get on my bike, choosing a route and remaining motivated day after day is tough, but I ride for all the women who can’t ride, including my beloved friend Rachel, who we lost to this disease just two days before last year’s East Coast ride.

Fundraising is tough — even for me! I understand that asking friends and family for money can be difficult, but it’s for a good cause and worth it. If you are not already donating to another rider and do happen to have a few extra bucks (even $15 would be fantastic!), I’d be grateful if you’d support me (and, ultimately, YSC). Your money will go directly to YSC, providing free resources, education and support to all young women affected by breast cancer.

In 2012, I chronicled my experiences training for my first TdP as a means of taking my body back from breast cancer. If you read my posts, you know that when I first started out, I didn’t even like bikes, struggled to reach a mere five miles on an exercise bike at my gym, learned the meaning of the term “Car Back!” and pronounced my contempt for those hideous bike shorts!!!

Now, I’m back for more! You can do it too!

There’s still time to register — please sign up today and join me! Each ride has a one-day option. For those of you in the South, our TdP Atlanta event, which happens on September 28, offers several choices of cycling distances, as well as a 5k run or walk option.

Hope to see you on the road … and don’t be alarmed if I holler “Car Back!!!” at you.

Smiles!

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Categories: Taking my Body Back

Wig Buying Tips from an Expert

TIna HeroldBeing diagnosed with breast cancer and told you’ll need chemo and your hair will fall out is hard enough. The last thing you need is drama when you shop for a wig. By sharing a few tips of lessons I learned the hard way, I’m hoping to offer you a less stressful experience.

First, let me say that you can approach this in different ways. Some women choose to go solo. Some bring their partner or spouse. Others decide to make it a party with their close friends.

Here are some pointers culled from my own wig shopping experience, personally wearing a wig everyday for the past six years and owning my wig boutique Wigged Out for the past five.

• Shop for a wig while you still have hair, if possible. It makes it easier to match both your natural color and hair style.

• Think twice about flying solo. You’ll benefit from a second opinion. Wear make-up and dress in the clothes you normally wear. It will help you to better coordinate your natural look.

• Ask your nurse or doctor for a recommendation of where to go. Remember, they see a lot of wigs … and can guide you with that first step.

• Try longer bangs to disguise eyelash and eyebrow loss. I tried bangs over one eye. It made me feel amazingly fun and chic! Plus, people didn’t notice my lack of eyelashes and eyebrows.

• Have the wig cut to frame your face. Sometimes there is just too much hair, which can make it obvious that you’re wearing a wig. Having the wig thinned out and/or cut to fit your face and body shape can make a huge difference in how it looks on you. Both synthetic and wigs made of natural hair can be cut.

I hope these additional nuggets are useful and make this process a little easier for you. Look for more tips in my next blog post.

Remember, you are not alone. If you have questions, please don’t hesitate to post them on YSC’s online community bulletin boards to get advice from other women who’ve walked down this road before you.

Or, you can contact me at http://www.imwiggedout.com or Wigged Out on Facebook.

Editor’s Note: See Tina’s previous post Wigged Out to learn more including the differences between natural and synthetic wigs.

 

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YSC Detroit F2F Hosts Survivor Education Event Funded by YES Fund Grant

 

One beautiful, breezy Sunday in May, I was sitting in my new hair stylist’s chair discussing my hair loss issues. We talked about my breast cancer treatment, which caused baldness,  hair regrowth … having a baby … more hair loss … and restarting Tamoxifen. AGAIN, more, but extreme, hair loss.

I was using a shampoo and conditioner called Nioxin, which was supposed to help clean and stimulate the scalp creating the best environment possible for hair growth. So far, it had been doing an okay job. My stylist told me what I was doing wrong and what I SHOULD be doing for better results.

LIGHT BULB!

I had to ask, “Would you have any interest in coming to one of my support group meetings to educate my friends about hair loss as well?” This is often a big topic of discussion at our Face 2 Face (F2F) meetings. It’s bad enough to have to lose your hair once, but to then watch it fall out in clumps DAILY after it all came back in? Really? Enough!

Theresa welcomed my idea with open arms and offered even more: “How about you bring your group into the salon for free scalp treatments (value of $25 each)?”

To turn it into a relaxing and social evening, I applied for a YES Fund Grant to help cover the costs of the event. Applying was an easy process, and, with the help of YSC’s Regional Managers, Medha Sutliff and Mollie Toland, we were approved and ready to move forward in no time at all.

Our Nioxin Hair and Scalp Event took place on June 26th at Theresa and Friends Hair and Nail Salon. Each of the 15 women who attended was given a consultation and a picture of their scalp under a microscope. Once they were given the treatment, they were shampooed, styled and then shown their squeaky clean scalp under the microscope again.

Members of the YSC Detroit F2F Network at Theresa and Friends Hair and Nail Salon for a Nioxin hair and scalp event.

Members of the YSC Detroit F2F Network at Theresa and Friends Hair and Nail Salon for a Nioxin hair and scalp event.

What happens with our scalps is like a fingernail, our hair follicles have a cuticle that  needs to be removed to enable new hair growth to proceed. Dead skin cells are washed away with the Nioxin Scalp Treatment to do just that. It’s like micro dermabrasion for the scalp. What’s the main ingredient? Sugar!

The event was a complete and utter success. The happy, tearful look on the faces of my friends leaving the salon with beautifully styled hair and a treatment plan for their hair loss was enough to make my year.

It turns out, I was able to put Theresa and Friends Hair and Nail Salon in contact with the cancer center where I was treated, Van Elslander Cancer Center. Together, they are planning more events for other cancer groups. I’m so thankful there are people are out there who have a desire and drive to help others!

YES Fund Grants

The purpose of the YES (You Are Not Alone Education for Survivors) Fund is to encourage YSC F2F Network members and State Leaders to organize educational events by providing reimbursement for qualifying programs.

These funds can be used for events that not only promote the mission of YSC but also allow survivors a time to network, share resources and receive valuable education. Priority will be given to educational events that follow YSC’s strategic priorities and are specific to the body of knowledge related to research, diagnosis, treatment, education, survivorship and/or other issues related to young women affected by breast cancer.

View the 2013 YES Fund Guidelines and Application (or download in MSWord).

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YSC: 15 Years of Knowledge, Resources and Support

YSC Turns 15Young Survival Coalition was founded in 1998 by three young women who were all diagnosed with breast cancer before the age of 35 to address a lack of information, support groups and research tailored specifically for this population. In the 15 years since, YSC has become the largest and most influential national nonprofit organization that supports young women affected by breast cancer. But, we still need to do more!!!

YSC’s wealth of resources and knowledge has come from listening to you, the women we exist to serve, and has helped us, with collaboration from the medical and research communities, develop programming just for you. Armed with these relationships and your feedback, YSC endeavors to reach and support the approximately 13,000 women aged 40 or under who are diagnosed in the U.S. every year … and we need your help!!!

To commemorate Young Survival Coalition’s 15th anniversary, we have been posting a “15 Facts” or “15 Tips” page on the 15 of each month on our website. Our lists began in January with YSC History and Accomplishments and will conclude in December. Upcoming topics will include: questions to ask your doctor, ways to give back to YSC, advances in treatment, ways to take your body back and intimacy. Have you seen these incredible resources and shared them with friends or family?

If you are a breast cancer survivor, a health care professional or someone interested in learning more because breast cancer has touched either your life or the life of someone you care about, we hope these lists will illustrate the scope of services YSC offers like YSC”s Newly Diagnosed Resource KitHelping Children Cope with Breast Cancer and the brand new What’s Next: A Young Women’s Post-Treatment Navigator.

If you are already familiar with our resources, attend a Face 2 Face local network (YSC F2F) or are a member of our online YSC Community or one of our dedicated volunteers, please take a moment to click the Facebook Like or Tweet buttons below and visit our Facebook page (or your favorite social media site) to share this month’s 15 Resources for Young Women or a previously published lists (see below).

Doing so will help us get the word out and meet the goal of supporting EVERY young woman in the U.S. who has been diagnosed with breast cancer! We cannot reach everyone who needs us without you!

Thank you all!

Previously Published Lists

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YSC Advocates Arm Themselves with Knowledge at Project LEAD®

Last week, my colleague Cindy Kicinski, YSC South Regional Field Manager, and I had the honor of attending Project LEAD® hosted by the National Breast Cancer Coalition (NBCC). Project LEAD® is a scientific training program for breast cancer advocates. The six-day, intensive coursework prepares individuals to engage meaningfully in conversations about breast cancer advocacy, activism, research and public policy.

From July 21–26th, we camped out in beautiful La Jolla, California, to take part in this important venture. YSC colleagues told us beforehand “they’ll keep you well fed” and “you’ll feel like you’re back in school” (both true), but no one prepared us for the sheer amount of information and enthusiasm that we would experience in that week’s time.

Fifty dedicated advocates came from around the country and Canada and spent the days listening to experts, participating in study groups and reviewing a very large binder of reading material.

YSC Advocates at Project LEAD®

From left to right: Megan McCann, Senior Manager, National Programs; Mikala Edwards, Arizona State Leader & Phoenix F2F Leader; Loretta North, Kansas City Volunteer; Cindy Kicinski Regional Field Manager (South); Jen Linares, Illinois Sate Leader; Leslie Hammersmith, Champaign-Urbana F2F Member; T. Eatmon Atlanta F2F Member; Amber Gillespie, Houston Heights F2F Leader & TdP West Coast Rider; Erin Price-Schabert, Virginia State Leader, DC Metro F2F Leader & TdP East Coast Rider.

At the end, we took away a greater knowledge of how breast cancer happens, what existing regimens can target these pathways and what promising treatments are in the pipeline. With this information, we are all better equipped to take part in decision making around research, public policy and community activism, for example.

Throughout the week, we heard from NBCC team members, including President Fran Visco, who emphasized the role we could play in helping NBCC reach its Deadline 2020, a concrete goal to end breast cancer by January 1, 2020, through strategic research on the primary prevention of breast cancer and the prevention of metastases (the spread of breast cancer beyond the breast tissue). We encourage you to learn more about how you can support this important program.

We are so proud to be part of an illustrious group of Project LEAD® graduates, past and present, and were especially happy to share the experience with others close to YSC (see photo at right). It is truly a testament to YSC’s strong and dedicated community that so many advocates took a week out of their busy schedules to fight for the end of breast cancer.

Thank you so much to the Project LEAD® staff, faculty, mentors and fellow attendees who made this such a special and inspiring week!

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If I Can Do It, You Can Too!!!

Me, at right, with fellow survivor Karin at the start of the 2012 YSC Tour de Pink West Coast.

Me, at left, with fellow survivors Karen and Carol at the start of the 2012 YSC Tour de Pink West Coast.

Most people that have been around me in the past year probably know that I have been living my life loosely based on two phrases post treatment: Life is short. Live life to the fullest.

Having a support group and incredible friendships made up of young breast cancer survivors is truly a blessing to me. It can also be really hard. The sad reality is that until a cure is found, not all of my friends are going to make it. How do you deal with that?

I deal with it by doing my best to not take life for granted. I deal with it by living my life to the fullest. I deal with it by challenging myself to do things I wouldn’t have done before I had cancer. I deal with it by giving back to the organization that has given so much to me in the past three years. I deal with it by riding in the YSC Tour de Pink (TdP).

If you had met me before I had cancer you would have thought, there is no way that this girl can ride 200 miles in three days! I would have agreed with you. If you had met me before my first TdP last year you probably had doubts still. I might have had a few doubts too. But I overcame my fears, doubts and my leftover aches and pains from chemo. There is something so powerful in setting such a physical goal and attaining it.
Ride with Me This Year
Register using code
RidewithBarb
to save $50* on your reg fee!
Offer good until 11:59 p.m. PT 7.21.

 

I no longer doubt whether I can do something that I set my mind to. And you shouldn’t either. If I can do it, anyone can!

Please consider joining me on either coast this year for an amazing adventure in honor of all of my YSC sisters.

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YSC Tour de Pink – Why? Well, Why Not?!

Me, at far right, with fellow survivors at the finish of the 2012 Tour de Pink.

Me, at far right, with my fellow survivors at the finish of the 2012 Tour de Pink.

Many people think I ride in YSC Tour de Pink because I have been involved since day one and think “how can I not.”  In all honesty, that is a part of it, but the biggest reason I ride is … because I can.  Recently someone asked me how I get up every day.  After all, I have stage IV breast cancer with metastasis to my brain, so how do I get up, go to work, run errands, go on vacation, go out to dinner, have fun etc.?  My response is, “How can I not?”

What is the point of going through treatment and trying to get healthy if you are not going to enjoy every minute?  Realistically if cancer doesn’t kill me, something else will, and I have zero control over that. So I want to enjoy all the time I have and all the experiences I can make.

Tour de Pink is one of those experiences.  Since Matt Purdue and I started the East Coast Tour de Pink in October 2004, it has been my favorite athletic event EVER! I love being on my bike, but more than that, I love the community we create on the days we are all together — riders, volunteers, supporters, logistics and staff.  I always say if the world could be like the traveling community we create every year it would be an amazing world — no war, no hunger and everyone is happy.  And we do create this world for three whole days.
Ride with Me This Year
Register using code
RidewithLisa
to save $50* on your reg fee!
Offer good until 11:59 p.m. PT 7.14.
 

 

I challenge anyone to experience what we create in these three days.  It’s a no-blockheads-allowed event.  Everyone takes care of everyone else both on and off the bike.  The people you meet become life-long friends even if you only see them once a year.  It is as if you saw them yesterday.  There is a camaraderie, compassion and emotion that I have never seen before and do not see or experience anywhere else.

This is why I ride.  Because I can and because of the people this ride has brought into my life.  Once a year, every year, for as long as I can pedal that bike.

Join me.  This truly is the ride of a lifetime.  I promise!

Editor’s Note: Lisa J. Frank is the current YSC board president, a founding member of the Young Survival Coalition, the co-founder of YSC Tour de Pink and the author of the blog You’re Crying on my Cashmere.

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Remembering Dr. Irma Russo, Dedicated Breast Cancer Researcher

Me, at left,  with Drs. Jose and Irma Russo

Me, at left, with Drs. Jose and Irma Russo

In 2006, when I was receiving treatment for Stage III breast cancer at Fox Chase Cancer Center in Philadelphia, I had no idea that on the other side of the building was a researcher who had been working diligently for over 30 years trying to find a way to prevent the disease that had ravaged my body.

Dr. Irma Russo was a pioneer in identifying the mechanisms of breast cancer prevention and was working to develop a hormonal treatment for disease prevention using the pregnancy hormone hCG. I was very sad to learn that Dr. Russo passed away from ovarian cancer last week. We young breast cancer survivors have lost one of our champions.

I first met Dr. Russo a few years after my diagnosis. She and her husband, Dr. Jose Russo, had put together an innovative program for breast cancer advocates called “Researcher for a Day.” We had the opportunity to shadow researchers and actually participate in their workday with the goal of making us more informed advocates.

Some of us learned how to seal chunks of tissue in paraffin blocks. Others learned how to analyze the genetic instructions in rat RNA. I had the daunting task of dissecting a rat and removing the mammary gland in order to extract the RNA for analysis. Throughout it all, Irma and Jose went around to each group of advocates encouraging and educating us. Having fought the disease as patients, they wanted to teach us how the disease was fought in the lab.

Over the next several years I got to know Dr. Russo better as I worked with her on several research projects. Once she had helped train advocates in the lab, she was eager to incorporate the unique perspective of a breast cancer patient in helping her to become a better researcher. She often asked survivors to participate in writing research grants and solicited our recommendations from the very beginning of the process.

Most recently, Irma and Jose Russo participated in the Young Survival Coalition’s Research Think Tank to help YSC determine the most pressing research questions to improve the quality and quantity of life for young breast cancer survivors.

When YSC was looking for researchers to be a part of this groundbreaking initiative, the Russos were some of the first to sign on.  To YSC’s invitation to participate, Irma promptly  responded, “The risk of breast cancer in young women is a topic very dear to me, and I will be quite pleased in participating in this symposium in collaboration with scientists and advocates.”

Not only did the Russos “sign on,” but they participated as a part of two work groups:  the Pregnancy workgroup and the Identification of Factors that Increase the Risk of Breast Cancer in Young Women workgroup. At the meeting, Irma was passionate about working with advocates and in particular young survivors to share her ideas and research.

Dr. Irma Russo and her husband, Dr. Jose Russo, celebrating their 45th wedding anniversary at the first YSC Research Think Tank meeting.

Dr. Irma Russo and her husband, Dr. Jose Russo, celebrating their 45th wedding anniversary at the first YSC Research Think Tank meeting.

In fact, the Russos elected to spend their 45th wedding anniversary at the YSC Research Think Tank because they felt so strongly about YSC’s research agenda.  With a little champagne and some cake, we celebrated their special milestone with them.

Dr. Irma Russo made a tremendous impact in the world of breast cancer research over the years. Together with her husband, she published five books and more than 200 research articles. As one colleague recently commented, “The collaboration between Jose and Irma was so deep that it was, at times, impossible to determine where one ended and the other began.”

Anyone who saw the two of them together recognizes the truth in this statement. But she was also very much her own individual — founding the League of Women Against Cancer in 1994 whose mission is to provide education and help for women with cancer and deciding several years ago to learn to scuba dive at the age of 66.

Until the time of her death at the age of 71, she dedicated her life to better understanding and prevailing over breast cancer. While her legacy will live on in her many achievements in research and the more than 50 physicians and scientists she trained and mentored over the years, it was her willingness to give a scared young mother who knew nothing about breast cancer the power of knowledge and the support of her convictions that will forever remain with me. She will be missed.

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CWS Knocks One Out of the Park

Last Wednesday, I was in a sweltering Washington, D.C., to attend the annual Congressional Women’s Softball game with Young Survival Coalition’s CEO Jennifer Merschdorf. This would be my first time attending the event, but it was apparent what a difference five years had made!

Members of the organizing committee told me how in 2009, the women of Congress played members of the political committees in front of a small crowd for the inaugural game.

Now in 2013, the Congressional Women’s Softball game has become one of the most anticipated events on the Hill, with women of Congress playing their new rivals, the Bad News Babes (women of the Washington Press Corp), and packing the Watkins Recreation Center with over 1,000 attendees!

Young Survival Coalition is so honored to be a part of this event.

YSC Volunteers at the 2013 Congressional Women's Softball game.YSC Volunteers at the 2013 Congressional Women's Softball game.

YSC Volunteers at the 2013 Congressional Women’s Softball game.

As soon as we got to D.C., I could feel the energy surrounding this game. Jennifer and I were able to attend the last volunteer coordination meeting where we talked to them about YSC’s programs and where the money from the game would go.

Volunteers included staff from around the Hill, members of political committees and employees at various banks and law firms in the D.C. area. We were so thankful they were able to take the time from their incredibly hectic schedules to work the game and for showing such enthusiastic support for YSC.

Throughout the next few days as we met with players of both teams and their supporters, I was thrilled to experience the high energy surrounding this event. Journalists, politicians, staffers, interns and aides, all of whom regularly spar on the political battlefield, now come together in a truly bi-partisan effort to raise awareness that young women can and do get breast cancer.

Echoes of the Press Corps team captain Abby Livingston’s sentiments were heard, “I think what’s amazing is that you could not have had this game twenty years ago.  It’s really great that there are this many women in Congress.”

The softball game introduces women on the teams to a small community of their peers who understand the political work culture of D.C., and can give advice and support to the same cause: supporting YOU, the young women affected by breast cancer.

Over a dozen young survivors from the Washington D.C. Face 2 Face (F2F) Network were present, meeting with some of our nation’s biggest lawmakers to strengthen the voice of the breast cancer community.

This year, it’s exciting to say that the organizing committee more than doubled their fundraising efforts and raised over $115,000! The money will go to providing education, support and empowerment to all young women affected by breast cancer across the nation.

2013 Congressional Women's Softball Game Results and Awards

Please take a moment to join me, my colleagues at YSC and all the young women we serve in thanking Kate Houghton, Atalie Ebersole and Natalie Buchanan of the organizing committee as well as the Congressional and Press teams for dedicating the past two months to preparing for and playing in last week’s game. A special thank you to our sponsors McDonald’s, Novartis, PepsiCo and Toyota and our many partners for their continued commitment. Last, but certainly not least, YSC’s D.C. F2F  leader Erin Price-Schabert who organized the survivors’ participation and put a face to young women with breast cancer in D.C.

THANK YOU and until next year!

Learn more about the Congressional Women’s Softball game and check out the 2013 rosters at the official event website.

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